March 26, 2014

When "Thank You" Doesn't Suffice

What do you do when your heart is so overwhelmed with gratitude that a simple spoken "thank you" seems like an awfully pathetic offering? You say a prayer that those two spoken words will be accompanied with all the feelings in your heart.

I have one of those such "thank you's" in my heart for this place. . .

Jill's House.

Did you feel the love in my fingers as I just typed those two words?

This past weekend marked our one year anniversary attending Jill's House and I absolutely love that place and every single person and thing under that roof.

Jill's House is a place created just for me (and hundreds of other parents of children with special needs.) It is a respite lodge where Bridger can go and play, swim, have fun, love and be loved for an entire weekend so the others in our family can go play, swim, have fun, love and be loved some place else, without the weight, worry and stress that accompanies daily life with Bridger. They are a special needs dream home - with roll-in showers, track systems, a pool heated extra warm for those that struggle with thermal regulation, sensory toys for every ability and need, a SleepSafe bed so Bridger can be just as safe at night there as he is at home, adaptive bikes, accessible playground complete with a wheelchair swing and more! Jill's House is staffed with skilled nurses 24/7 that can care for his medical needs. And even more importantly, Jill's House is staffed with people whose desire it is to care, love and nurture children with special needs so their parents can have a moment to care for themselves and the other children in the family. My goal has always been to fill Bridger's world with people who love him just as much as I do - and Jill's House does!

When Bridger went for his first stay in March of 2013, I was a mess. None of my children had ever had a sleepover or been away at overnight camp - and now I was sending Bridger away for two nights?! I worried about him not understanding the concept of sleeping away from home and that mom would come back again in a day or two. Would he feel abandoned or scared? When I picked Bridger up from his first weekend there, his reaction as we drove away answered every one of my concerns. He was sobbing. Not just a whiny cry, but a full-on body heaving bawl as he managed the words, "More Jeh How" in between hyperventilating breaths as we drove home.

We have attended many weekend respites and day camps since that first stay and there are always two people crying in the car now. Bridger - and me. I cry on the way there on Friday evening. The weight of surviving the week hangs heavy on me and as I drive there I am overwhelmed with anticipation of a weight soon to be lifted. I enter the lobby to a welcoming fire roaring the stone fireplace and the feeling of love in the air is so thick you can cut it with a knife. Within those walls are dozens of the most perfect and loving children ever created by God and you can feel of that greatness the minute you enter through those doors. Volunteers are warmly welcoming every child and contributing to that aura of love.

As I walk back to my car I pass a plaque on the exterior wall upon which is engraved the words of the Savior in Matthew -- "Come unto me, all ye that are heavy laden, and I will give you rest." Rest. That is a rare commodity in my life. But a reminder of that promise and the feeling that hits me when I get behind my wheel to drive home will cause my eyes to start leaking again.

This time with tears of relief. I know that I will survive 48 more hours. We have used that 48 hours of rest in different ways - I have gone on a date with my husband, we have gone out to dinner as a family (and enjoyed it!), we have gone away to the cabin, we have slept in past 7am, we have gone to amusement parks, gone on a trip as a couple in another country, cleaned the garage, gone to games and concerts. . . all activities that we could not have done with Bridger. And that evil companion of guilt is removed - because Bridger would rather be at Jill's House than any of those other places. The final set of tears is the consistent ones from Bridger every time we get in the car to return home. We go through our recitations every time we drive away: Bridger, "I go back anader day?" Me, "Yes, you will go back another day." Repeated over and over for the next 20 minutes.

Game room - not to be confused with the Arts and Crafts room, which is down the hall.

This weekend Jill's House went the extra nurturing mile by tending to another weight on my heart - the experience of my other children in this journey. I worry about their needs, their emotions, particularly jealousy. Jill's House answered that need by having a party just for them - Bridger was not invited! They invited them into Jill's House for a fun pizza dinner and to play in all of the fun areas the same way that they imagine that their brother probably does. All the while Alan and I were treated to a delicious catered dinner and a presentation from a counselor about the blessings and stressings on special needs siblings.

Music room where Bridger dances along to other's karaoke.

Eliza testing out the Chill Out chair in the pod

My dream bathroom. truly.

Amazing heated pool where Bridger has two attendants caring for him to keep him safe.

Looking back over the past year, Alan and I both agree that Jill's House has been the greatest blessing in our lives and the single most important tool for success we have had to help us thrive in this journey.

So now you understand my conundrum. How do you say a simple "thank you" to that?